MADISON – Today, Representative Lisa Subeck (D-Madison) and State Senator Rachel Cabral-Guevara (R-Fox Crossing) were joined by Stephanie Johnson, Director of the Parkinson’s Disease Alliance of Wisconsin, physicians, advocates, and other lawmakers to introduce legislation creating the Rick Johnson Parkinson’s Disease Registry. The legislation positions Wisconsin to join fifteen other states that have established such registries. Wisconsin’s registry would be housed at the University of Wisconsin School of Medicine and Public Health to collect critical information for tracking the incidence and prevalence of Parkinson’s disease and related disorders in Wisconsin.
“Parkinson’s is the fastest growing neurological disease in the world, yet Wisconsin lacks the information we need to fully understand how deeply Parkinson’s Disease and related disorders impact our communities,” said Rep. Subeck. “This registry will give patients and families across Wisconsin hope by solidifying our state’s commitment to understanding the disease and pursuing solutions to improve lives today and bring us closer to a cure.”
More than 21,000 Wisconsinites are currently living with Parkinson’s, the fastest-growing neurological disease in the nation. Until now, Wisconsin has lacked a systematic way to monitor the disease, making it difficult to direct resources, advance research, and support patients and families. The new registry will ensure that policymakers, physicians, and researchers have access to accurate statewide data that protects privacy while improving care and outcomes.
“The registry will unlock the opportunity for better care and stronger research by empowering the University of Wisconsin-Madison to collect comprehensive, up-to-date data that identifies high-risk groups, uncovers disparities, and improves treatment,” said Rep. Subeck. “With UW researchers leading on this project, new treatments, preventative measures, or perhaps even a cure could soon be within reach.”
The registry is named in honor of Rick Johnson of Fitchburg, who lived with Parkinson’s for 13 years before his passing in 2023. His wife, Stephanie Johnson, later received her own diagnosis and quickly recognized that Wisconsin has no system to track how many people are affected, where they live, or how the disease progresses. In response, she founded the Parkinson’s Disease Alliance of Wisconsin and brought together patients, families, providers, and national experts to advocate for the creation of the Rick Johnson Parkinson’s Disease Registry.
Rep. Subeck represents the 79th Assembly District and serves as Chair of the Assembly Democratic Caucus.
